Two Massachusetts children were barred from a youth production of William Shakespeare’s The Tempest, due to what their lawyer describes as discrimination related to one of the kids’ severe food allergies.

Through their parents, the children have made a formal complaint with the U.S. Department of Justice and the Massachusetts Commission Against Discrimination. The complaint, filed Nov. 3, 2015, alleges discrimination on the basis of disability by the theater company, and requests substantive changes to the troupe’s policies for dealing with children with disabilities.

Ten-year-old Mason Wicks-Lim says in the complaint that the organizers of the Young Shakespeare Players East (YSPE), a Massachusetts chapter of the Wisconsin-based Young Shakespeare Players (YSP), because of the accommodations his food allergies require. These include always being in the presence of an adult trained in the use of an epinephrine auto-injector.

When his friend Sam Picone-Louro sent an email advocating on Mason’s behalf, the 12-year-old was also barred from the theater program – unless she agreed to write an apology.

“A place of public accommodation needs to be open to everyone,” says Mary Vargas, a lawyer representing Mason and Sam. “You can’t say that everyone is welcome but then exclude kids with disabilities.” Under the Americans with Disability Act and Massachusetts state law, it is prohibited to deny children access to educational and recreational programming on the basis of disability. In many cases, a person with a food allergy is considered to have a disability under the ADA. As well, the complaint refers to the theater as being “a place of public accommodation,” which must provide equal access.

In a statement to Allergic Living from its lawyer Frank DiPrima, the non-profit YSPE adamantly denied the discrimination allegations. “This is the story of a mother who refused to accept responsibility for her little boy’s medical condition, and then exploited that condition to accuse a tiny charity of discrimination,” wrote DiPrima. He notes that many youths with disabilities have “flourished” in YSPE’s programs, including those with food allergies.

This offstage drama began when Mason, an avid reader with severe allergies to peanuts and tree nuts since the age of 3, started taking an interest in Shakespeare. Back in May, Mason’s parents tried to enroll him for the YSPE’s autumn production of The Tempest – one of his favorite plays.

Suzanne Rubinstein, director of the YSPE, contacted the boy’s mother, Ali Wicks-Lim, to discuss his food allergies. According to the complaint, over the course of three conversations, Rubinstein raised concerns about the severity of Mason’s allergies and the social exclusion he might face in the program. The complaint said she characterized the boy’s need to carry epinephrine auto-injectors as “scary”. Wicks-Lim said that Mason had been successfully managing his allergies for eight years, but the complaint says Rubenstein said only to reapply the following year, when Mason’s case “might” be reconsidered.

When Sam, who has appeared in YSPE productions, heard that Mason wouldn’t be allowed to participate, she emailed Rubinstein. “My friend has a nut allergy, which is a disability, and saying that we are a private organization and you don’t have to follow those laws is an excuse, and you are defending something that is not worth defending,” wrote Sam.

DiPrima says Sam was not allowed back into YSPE programs, for which a student’s family pays $500 per production, unless she apologized for what he called her letter’s “disrespectful tone.” But Vargas takes quite a different view, saying of Sam’s support of a friend: “Disability law does not only protect those with a disability, it protects those who advocate for them. We want to encourage people with our laws to do the right thing.”

After receiving Sam’s letter and one from another child on Mason’s behalf, Rubinstein then sent an email to all of the theater program’s families. “YSP strives to be open and accessible to as many children who want to participate,” she wrote. “Unfortunately, in some rare instances we cannot always accommodate the necessary support a child or family might need. It would be irresponsible for YSP East to overlook such risks or take them lightly.”

According to the complaint, after three months of correspondence and discussions, the founder and board of directors of the parent YSE agreed they could adopt a nut-free policy for food brought in by program participants. Rubinstein emailed Wicks-Lim agreeing that she and another YSPE volunteer could be trained to administer an epinephrine auto-injector. She said Wicks-Lim would need to sign a waiver absolving the company of liability should the device need to be used.

However, the waiver that Wicks-Lim was ultimately asked to sign had different provisions, such as stating that the boy’s health and well-being – including the dispensing of his medications such as epinephrine – were solely the responsibility of his family and not of YSPE. If the mother wanted to ensure Mason was always around an adult able to administer emergency epinephrine, YSP suggested that she – or someone hired by the family – attend the nine hours of weekly rehearsal with him.

Wicks-Lim could not agree to the conditions that were put forward in this waiver. As a result, Mason, who has attended summer camps and taken kung fu lessons with no such issues related to his allergies, was unable to enroll.

The theater company’s lawyer DiPrima said it was not feasible for YSPE to agree that Mason would always be supervised by an adult while in the program. “The tiny charity, with no employees, no staff, one adult full-time volunteer and one quarter-time volunteer, no premises of its own and no money, responded that it cannot possibly have an adult in the boy’s presence at all times unless that adult is the mother or someone she appoints,” he wrote to Allergic Living. Of young Sam, he wrote pointedly: “The disrespectful are not a protected class.”

As for the young, would-be actors, the complaint refers to Mason and Sam suffering “humiliation, embarrassment and sadness” over the drama that has unfolded and their inability to take part in a kids’ theater production.

Though this process has been difficult, Mason told Allergic Living there is a lesson in it: “I learned that if someone does the wrong thing, you really have to tell them that or else they’ll keep doing it.”

]]>http://allergicliving.com/2015/12/15/nut-allergic-boy-and-friend-take-legal-action-against-youth-theater-program/feed/0College with Food Allergies: Lessons From a Seasoned Momhttp://allergicliving.com/2015/08/20/college-with-food-allergies-lessons-from-a-seasoned-mom/
http://allergicliving.com/2015/08/20/college-with-food-allergies-lessons-from-a-seasoned-mom/#commentsThu, 20 Aug 2015 12:50:02 +0000http://allergicliving.com/?p=36239Robert, Nicole and Morgan Smith in the cafeteria at the University of Denver.

When my son, Morgan, now 20, was formally diagnosed with peanut allergies at 18 months old, one of my first thoughts was: How will he ever go to college? If you’re a food allergy parent, you probably understand anxiety about planning for the future. College is that great frontier where students eat all their meals in cafeterias and sleep in dorm rooms with some food-allergen-eating roommate. Worst of all, we can’t be there if something goes wrong.

Since his initial diagnosis, Morgan has added many more, while experiencing several allergic reactions. He has life-threatening food allergies to peanuts, tree nuts, sesame, fish and shellfish along with eczema, environmental allergies (furry pets and pollen) and mild asthma. This combination made living in a dorm a distant hope. Still, we wanted to be open to all possibilities.

In the junior year of high school, most students begin the process of searching for a college to fit their academic needs and dreams. A teen with food allergies has an important additional need: Finding a food allergy aware college. While deciding where to apply, we found those two factors to be equally weighted.

First, start by getting more information about the colleges on your child’s list by visiting the school’s website. Owing to the jump in the number of students coming into college with special food needs – celiac, vegan, vegetarian, allergies, intolerances, Crohn’s and colitis – many colleges now offer special menus and apps to track ingredients. Some have a dietitian on staff to assist with safe dining options. Dig deep into all the available information.

Is your child ready to leave home?

Even among teens without food allergies, there are plenty who are not ready to be hundreds or thousands of miles away from home. Others are more than ready. In any case, at age 18, food-allergic students, like the rest of the college-bound cohort, are considered legal adults. So, Mom and Dad, that means you won’t be negotiating accommodations with the Disability Services Office (DSO) of the college – your child will be!

Before leaving home, we agreed Morgan needed to learn and be willing to: ALWAYS carry his epinephrine auto-injectors; order food at a restaurant; grocery shop and cook for himself; properly react to an allergic reaction or anaphylaxis; train his friends about allergic reactions and administering his epinephrine auto-injector; be comfortable speaking with a doctor; remember to take all his medications for pollen allergies and asthma; advocate for himself with teachers, the Disability Services Office, chefs and employers.

This list may seem long; but that’s why it’s never too early to begin getting your child ready for the world on their own – and you have 18 years to work on it.

Morgan and his roommate, Thomas.

Personally visit the colleges and universities

These visits are vital. Visiting in person gives you the true feeling of a school beyond the marketing message of its website. And asking the right questions while you’re on campus is the key to a successful fact-finding mission.

Start by evaluating you and your child’s own needs for college accommodations: What is your teen’s ideal living situation for her or his college years? Being at home, in a dorm or in an apartment? What is your child’s ideal college academically? Can these two criteria be met by one college?

Remember, it never hurts to ask for exactly what you want. If you want a chef to specially prepare your child’s meals, ask if that can be done. Does your child want to live in an apartment instead of the required freshman dorm? Ask for that.

Here’s a list of questions on food allergies and asthma that are useful when visiting a college:

• Are ingredients listed on all foods served in the cafeteria?
• Is there a chef on site to take special orders?
• Are the cafeteria workers trained on food cross-contact?
• How many of your child’s allergens are regularly served?
• Can I speak with a dining manager about my child’s needs?
• How old are the dorm buildings and cafeteria facilities?
• Has there been any water damage or flooding in the past?
• Are the dorms air-conditioned? (If not, what documentation will be necessary to submit for a medical necessity to live in air-conditioning?)
• Are pets (such as dogs and cats) allowed in the dorms?
• Can the resident adviser be trained on the administration of an epinephrine auto-injector?
• Can roommates be selected to ensure no food allergens are in the dorm room?
• How is a 911 call handled on campus?
• Is food allowed in classrooms and lecture halls?
• Is smoking allowed on campus?
• What paperwork is necessary to complete for the Disability Services Office?

There are dozens more questions you could ask, but the idea is to form your own list and be as thorough as possible. Speaking directly to the person in charge while visiting the campus is one way to make sure you get the answers you need. Set up personal meetings with each department (housing, dining, academic major department) when you visit the campus, and pick up business cards so you can follow up later if necessary.

It can be complicated to coordinate the timing of completing paperwork for the Disability Services Office when your child has yet to apply and be admitted to a college. We didn’t speak with the DSO directly on campus visits, nor did we fill out paperwork on the spot, because we didn’t want to flag Morgan prior to him being admitted. But most colleges have the DSO information on their website, along with deadlines for paperwork.

The 504 Plan from K-12 schools doesn’t follow your child to college. Every college we visited stated that accommodations are available in college, however there is a whole new set of paperwork to complete, and documentation of the medical condition will be necessary for the Disability Services Office to authorize the accommodation. Many DSO’s paperwork is not yet up to date to include food allergy accommodations. They generally deal with learning accommodations, so some patience and education of staff may be necessary on your part along the way.

OK, so your child has been diagnosed with a food allergy. You’ve fearfully witnessed the reaction that alerted you to the allergy, you’ve been to the doctor’s office and sat anxiously watching his arm for that telltale bump to appear and you’ve suddenly become the “food police” as you read, re-read and read again the labels on every food product that enters your home.

Your allergic child knows not to share food, to ask questions before eating and now carries an epinephrine auto-injector that he can administer to himself should the need arise (gulp!).

In all of the craziness, the worry, the anxiety, the fear and even the guilt there’s one little thing that often goes unnoticed: the siblings. It’s not that we mean to “ignore” them, it’s just that the immediate medical needs of the allergic child can easily – and understandably – take priority. But we need to remember that it’s not only the allergic child’s life that is changing, but also the lives of all the children in the family, so I would like to tell my story of a super-amazing little brother.

One day last summer, we finished our dinner and headed off as a family to watch my younger son Michael’s soccer game. As usual, my older son Nathan took along his own soccer ball to go and practice his shots on an empty net as his younger brother joined his team.

About 20 minutes later, I felt a tugging on my elbow. There was Nathan looking like a puffer fish, for lack of a better description: a red, swollen face and covered with hives. Luckily, I had allergy medication in my bag, so I administered it as the two of us left the soccer field, leaving my husband and Michael to continue with the game.

Just before leaving the house, Nathan had tried a pecan-based chocolate and he was now having an allergic reaction to it. Fortunately, the over-the-counter medication worked fairly quickly and we were able to touch base with a doctor and return to the soccer field just minutes after the game ended. As we pulled into the parking lot I could see the anxiety on Michael’s face as he now knew why mom was suddenly missing from the sidelines.

Yes, Nathan was exhausted from the physical demands of the allergic reaction. Yes, my husband and I were both riddled with anxiety over what Nathan had just endured. But, yes, Michael too was feeling the emotional demands of the situation. He too was afraid, upset and full of questions.

Over the next few weeks we went through what every family does when a child has been diagnosed with a food allergy, and Michael went through just as much as the rest of us.